Posted By Posting
Jan 17, 2005
Raising-Angels
Chronic Cough Recurrent Hiatal Hernie after 3 Nissen Fundoplications in 5 year old
Hello, I am looking for anyone who's child might be having the same problems of my 5 year old son. My son had his 1st nissen preformed @ 3years of age, he has had 2 more over the last 2 years. We have been from gtube, to j tube, to TPN. He has herniated after all 3 surgeries and is herniating again his biggest symptom being a Chronic Cough for over a year now. Abnormal PH Studies and a negative esophageal biopsy 3 weeks after his tonsils were removed. I am not sure I agree with that as he hadn't eaten for over 3 weeks when the biopsies were taken. I know that the esophagus can heal quite quickly especially with the meds he gets. Any how, this cough is driving him & us nutts. We've been to every Dr. in the world no allergies, abnormalities anything. I am convinced it has to be an abnormality with the Nissen or the hernia any thoughts would be great. Thank you
Jan 18, 2005
Carla
Mom of 3 year old Chelsea with severe GERD, 2 fundos and hernia repairs, chronic GI pain, laryngospasms, RAD, subglottic stenosis, chronic congestion, and food allergies AND 4 month old Gavin with GERD and MSPI
some similarities in my daughter
Hi, My daughter's severity with reflux is different (for example-no feeding tube), but there are some similarities in our experiences that I thought could help. She will be 3 in two months. She has had 2 fundos and hiatal hernia repairs in the past year. The surgeon said that her diaphragm is "flimsy" and it makes her at risk for constant re-herniations. So during this past fundo, the surgeon put in 7 extra "limiting stitches" as well as an extra stitch then what is usually called for on the hernia repair. According to him, the limiting stitches are somewhat new, but they have had less third and fourth re-herniations as a result of using them. The reserve them for kids who do come in for another fundo because of another hernia. They attach the esophagus to the diaphragm in the front, sides, and back. Then, they attach the stomach to the diaphragm in the front and back. He said the draw back is that it can make swallowing more difficult. So obviously you weigh what is most important for your child. My daughter had a chronic cough that contributed to her re-herniation. The surgeon said that hard coughing, wheezing, and stridor can have the same effect on the wrap and hernia repair as wretching does. After her 1st fundo, her sinuses never cleared up. They stayed severely infected and as the acid stopped coming up, scar tissue grew on her vocal cords from long-term damage. As a result she had a chronic cough that tore open the repair and eventually started refluxing again about 3 months after the 1st surgery. One of my biggest suggestions is to figure out how to control the cough before you consider re-doing the fundo (if you even are considering it). It sounds possible to me that your son has a "flimsy" diaphragm as well and that the chronic coughing is causing the diaphragm to pull on the stomach resulting in it coming up into his chest. Our surgeon wouldn't consider re-doing my daughter's fundo until we found a way to stop the coughing because he said it would continue to re-occur otherwise. So we saw an asthma and allergy specialist and an ENT who worked together. She was tested for allergies and nothing came up. Since she continued to have stridor and blue spells, they did a bronchoscopy and found scar tissue on her vocal cords resulting in subglottic stenosis. They did a CT scan of her sinuses and saw there was almost no room for drainage and they were severely inflammed. So they put her on nasonex nasal spray, and Atrovent through a nebulizer to decrease mucus production, so as a result the cough would decrease. She eventually got Pulimort through a nebulizer to decrease the swelling in her airway which also decreased the cough. We finally got to a point that it was under control. However, refluxing continued to produce the mucus so she was on this stuff all day every day. She couldn't tolerate any reflux med except for 15 mg of Prevacid and lots of tums and mylanta. Even a stronger dose of Prevacid gave her severe abdominal pain. Re-doing the fundo this time (almost 4 months ago), so far, has been a dramatic improvement. Her airway and sinuses have been completely clear for 3 months. She is off of all meds and has no signs of reflux. My instinct tells me that it is for two main reasons: we got her whole airway as healthy as we possibly could before we did the surgery and the limiting stitches are holding everything in the right place. It took abut a month after the surgery for her airway to calm down (she was also diagnosed with reactive airway disease right after her 2nd fundo), but we continued to use the meds that conrolled all of it the 1st time and it was sufficient. We have since weaned her off but have it incase of a cold or something, which to our surprise hasn't happened yet. Anyway, sorry this is so long. My hope is that in sharing this, something I say will trigger you to come up with something that maybe you haven't thought of yet! Write back if you have any questions.... Good Luck, Carla
Jan 18, 2005
Raising-Angels
Carla Thank You !!
Carla, Thank you for your story. Our son was meant to have a mesh insert made of S.I.S. during the second fundoplication surgery. His 1st fundo herniated within the 1st year. During the 2nd procedure of repairing the hernia & re-doing the nissen they choose to use the mesh to help strengthen the wall to eliminate the hernia form reoccurring, unfortunately after he came out of surgery & was sent home we realized that he couldn't tolerate his own saliva, and that his stomach could not tolerate anymore tube feeds. Upon returning to the hospital we found out that the mesh had been attached to the wrong area and stitched through the vagus nerve, we also learned that he for some reason had 0% gastric emptying. A week before the surgery he had a Gastric Emptying Scan that was perfectly normal. After an immediate surgery to remove the mesh and repair the wrap, and a pyloralplasty Noah was in the hospital for 45 days recovering from all he had been through. That was almost 2 years ago now. Since, then we have battled with G-tube feeding, & TPN. Sepsis infections, you name it anything that could have gone wrong has. Now, things have been a little more quite for us. Noah is now 5 and more verbal about his discomfort. He recently had his tonsils & adenoids removed. He also had ear tubes placed because his ears weren't pressurizing they way they should. Noah has had numerous CT Scans of the Sinus's, seen respiratory. We are at a loss for where the dry hacking cough could be coming from. The cough isn't his only problem; he also says daily that his heart hurts. We think it's pressure from food getting lodged even though his wrap is on the loose side. He also has shortness of breath when running, climbing, ect. We've pretty much exhausted all of our resources, with no concrete reasons why he is still having these types of problems. The Dr■s also feel this is the only answer but, we all are at a loss of what to do with him now. Thank you so much for your support.
Jan 20, 2005
Carla
Mom of 3 year old Chelsea with severe GERD, 2 fundos and hernia repairs, chronic GI pain, laryngospasms, RAD, subglottic stenosis, chronic congestion, and food allergies AND 4 month old Gavin with GERD and MSPI
To "Raising Angels"
Has he been checked for exercise-induced asthma? The cough combined with the shortness of breath in physical exertion sounds suspicious to me. I am fairly certain that a cough with shortness of breath has the potential to be a problem that also causes chest pain....this could be where the heart hurting is coming from (assumng it is not heartburn). Have you seen an asthma and allergy specialist? Even though my daughter didn't have allergies and didn't have typical asthma, they were the biggest help in controlling my daughter's cough. Just as an FYI, incase you don't know, asthma and allergy specialists are different from pulminologists. Do you think he is still refluxing? Is the wrap herniated right now?
Jan 20, 2005
Anonymous
Hi, That is a good point we will have to look into it some more. He had aspiration problems with wheezing for the 1st 20 months of his life. He was in the hospital so many times for wheezing and retraction. He used to retract so much that he would briuse around his rib cage. He did this all the way until 20 months old so, I guess it could be maybe even some damage to the lungs or structure from way back then. He has seen 2 different allergists as Noah has what alot of Dr's call "Allergy Ringers" around his eyes. He has had every type pf allergy testing, elimination diet, ect. The only thing that ever showed was a +1 to molds. Which isn't too big a deal. He even had patch testing for allergies which isn't very common here on the West Coast. So far nothing has shown. His wrap showed to be herniated last Monday when he had his endoscopy. However, the cough was here even when the wrap was intact. I am just kind of leaning towards that perhaps a flimsy diaphram and a tweaked wrap are to blame. He still gets pulmicort, ventolin, nasonex, & claritin on top of his GI Meds. I have wondered about reactive airway disease and also about the Reflux. He had a positive PH Study for prolonged reflux I know they said it was over 40% of the time with longest episode lasting 10 minutes. Cough is such a vaugue thing and really isn't a true symptom for much. I just worry as he is apt to dehydrate so easily that the cough causes more moisture to be lost from his body and changes his body temp ect. Thus irratating the cough more so it's like an endless cycle. Oh, I just can't wait for the day that this is all in the past. This is the longest roller coaster I've ever been on. He is my 3rd baby out of 4 children and I just nnever would have expected to have to deal with anything this frustrating. This coming out of the mouth of a mommy to a 28 week preemie, that seemed easy to dealing with this reflux, and all of the problems that have come along with it.
Jan 20, 2005
Carla
Mom of 3 year old Chelsea with severe GERD, 2 fundos and hernia repairs, chronic GI pain, laryngospasms, RAD, subglottic stenosis, chronic congestion, and food allergies AND 4 month old Gavin with GERD and MSPI
response
We live on the west coast too...orange county, california. Chelsea always had the allergy ringers around her eyes too. It was because she was so congested from reflux. She was also on pulimort and nasonex as well as atrovent and atarax (an antihistamine). I say "was" because as of right now she isn't on anything and so far so good. Every good day is such a blessing!!! Was he diagnosed with asthma or reactive airway disease in the first 20 months of life? Was the wheezing problems back then reflux induced? If so, could what is happening now be a the same type of problem exhibiting itself in a different way? According to what my daughter's doctor told me, Reactive Airway Disease is a type of asthma that is induced by something like a virus, or reflux, or an external inhalant like smoke. But my daughter's "reactive airway" is her upper airway, and certain triggers (the presence of mucus, acid, and a breathing tube) cause it to restrict. It appears to be extremely obvious when she is refluxing and when she is not--the difference between a clear airway and sinus passage and a gunky one! This is totally my own opinion based on a mom's un-medical liscensed knowledge and experience.....but because he had the wheezing problems as an infant/toddler and because of a herniated wrap and the abnormal ph study, I would assume the shortness of breath and heart pain is reflux induced. The reflux could be triggering the reative airway disease, back then and now. The cough part is frustrating but would bug me enough to persist in finding out the reason, because it has the potential to herniate a wrap. If I were you I would be so beyond frustrated that the wrap keeps herniating. Would you even consider redoing it? Has the surgeon heard of limiting stitches? I got a little anxious reading that the mesh insert was attached to the wrong place through the vagus nerve......dare I ask if you had the same surgeon re-do it? I am so sorry that this has been so hard. I feel your pain in many ways! I also can't imagine a 28 week preemie- it freaks me out a little because I am 27 weeks pregnant right now!!!!! I hope you find some resolution to your son's conditions soon--write back if you want.....or you could email me at tccgorecki@cox.net Take Care, Carla
Apr 14, 2005
Carol in Bflo.
Coughing child
So sorry to hear that your son has been suffering. My MOM suggestions are: get your child allergy tested, get lung function tests, test for CF, and have an excellent pediatric GI get involved! We have had great results with Dr. Alex Flores at Floating Hospital in Boston MA. Children come from all over the world to be evaluated by him. We don't live near Boston, but traveling to see him has been a life saver for our son. Good luck.
Jun 23, 2005
Anonymous
Have you ever heard of Tracheomalacia? I am a mom of a child born with EA/TEF (esophagus not connected to stomach, with a connection between the trachea and esophagus). Tracheomalacia is somewhat common with EA/TEF children (almost all take meds for reflux). It causes a lot of the kids to get a lot of colds(pneumonia) because the Trachea is softer and they cannot cough out the secretions like other people can. My son's cough - that he has all year round - sounds like bronchitis. Here's a description: Usually, infants with EA/TEF have a softer-than-normal trachea (windpipe) which is called tracheomalasia. The trachea branches into the right and left bronchi, which connect to the respective lungs. Together this is referred to as the tracheo-bronchial tree. For unknown reasons, the tracheo-bronchial cartilages may be soft allowing the airway to partially collapse under exertion. This partial collapse also accounts for the barky cough associated with EA/TEF infants. When the tracheomalacia is very severe, however, noisy breathing and even difficulty getting air in can result. With time, the tracheo-bronchial cartilages will firm up. But, for a small percentage of patients, very severe breathing problems may occur. For these children, we may recommend an aortopexy which rounds up the airway and prevents these spells. The aortopexy operation consists of pulling forward the large vessels, including the aorta, which overlie the tracheo-bronchial tree. The airway is held it open which prevents collapse with exertion. We have found this to be a very effective operation. With the airway in the normal rounded configuration, the cartilages will firm up with time and resist collapse. I think this is something that only happens with kids born with EA/TEF, but you never know...
Jun 23, 2005
Anonymous
Tracheomalacia
Have you ever heard of Tracheomalacia? I am a mom of a child born with EA/TEF (esophagus not connected to stomach, with a connection between the trachea and esophagus). Tracheomalacia is somewhat common with EA/TEF children (almost all take meds for reflux). It causes a lot of the kids to get a lot of colds(pneumonia) because the Trachea is softer and they cannot cough out the secretions like other people can. My son's cough - that he has all year round - sounds like bronchitis. Here's a description: Usually, infants with EA/TEF have a softer-than-normal trachea (windpipe) which is called tracheomalasia. The trachea branches into the right and left bronchi, which connect to the respective lungs. Together this is referred to as the tracheo-bronchial tree. For unknown reasons, the tracheo-bronchial cartilages may be soft allowing the airway to partially collapse under exertion. This partial collapse also accounts for the barky cough associated with EA/TEF infants. When the tracheomalacia is very severe, however, noisy breathing and even difficulty getting air in can result. With time, the tracheo-bronchial cartilages will firm up. But, for a small percentage of patients, very severe breathing problems may occur. For these children, we may recommend an aortopexy which rounds up the airway and prevents these spells. The aortopexy operation consists of pulling forward the large vessels, including the aorta, which overlie the tracheo-bronchial tree. The airway is held it open which prevents collapse with exertion. We have found this to be a very effective operation. With the airway in the normal rounded configuration, the cartilages will firm up with time and resist collapse. I think this is something that only happens with kids born with EA/TEF, but you never know...
Check with your
doctor first!